June 2011

Dispatcher's Notes

Dear Friends,

PH International Quarterly has joined the 21st century! This quarterly newsletter was created to keep you informed of developments within the global network of PH associations, now more than 50 groups strong! This e-newsletter connects you to links and resources, offers snapshots into recent news, and keeps you and your fellow leaders in close contact. Please share this news with medical professionals and patients in your country as you see fit.

We welcome your feedback to help us make PH International Quarterly a valuable resource. If you’d like more information on any of these stories, email International@PHAssociation.org.

In the days and weeks after March’s devastating earthquake, our friends in Japan reported jumping quickly to the aid of patients in need. Using Twitter, PHA Japan and doctors in the area were able to connect with patients, doctors and companies to coordinate treatments. » Read More

Canadian researcher Sebastien Bonnet, MD, of Laval University in Quebec, has made the exciting discovery of the PIM-1 protein, a compound that is virtually unseen in normal patients but that is detected in PH patients in amounts relative to the severity of the disease. The discovery of the PIM-1 protein provides insights into PH and has positive implications both for early diagnosis and treatment. » Watch PHA's webinar, hosted by Dr. Bonnet, to learn more

Last summer, PHA hosted our First International Leaders’ Summit. The day-long event was the first of its kind to offer targeted education and networking opportunities between leaders of PH associations internationally, with lessons based on your stated needs offered by your peers.

One of the most-asked-for resources was an overview of fundraising strategies. Hear from Gerry Fischer, President of PHA Europe, and Rino Aldrighetti, President of PHA (US), about raising funds for your organization from the community and corporations.

Do You Have a Lesson to Share?

Send it our way! Whether it’s creating a website, hosting a gala, or getting your government officials to listen up, your experience could help other leaders in their own work. Contact us at International@PHAssociation.org.

In the aftermath of PHA-UK’s phenomenal Blue Lip global awareness campaign, PHA Europe and its members launched a “breathtaking” public awareness campaign on Rare Disease Day. The campaign aims to inform the public about the importance of early diagnosis and treatment and events have been hosted across Europe. » Watch media coverage of the campaign

Israel Targets Primary Care Medical Education

PHA Israel, 2011 winners of a PHA Lantos Family Grant, will host a one-day conference entitled “Pulmonary Hypertension: Profile of the Disease” on June 16 in Tel Aviv. The conference will introduce PH to primary care physicians and other medical professionals, researchers, and industry groups. Experts from Israel’s major medical centers will present at the event, which will include sessions on diagnosis and treatment, as well as new research.

“We strongly believe that a conference geared to the primary health community is an excellent way to raise consciousness of the disease among those who are best able to screen for it and who can refer people at risk for diagnosis and treatment,” wrote Yosef Gottlieb, PHA Israel Board Member and PHA Europe Israel Co-Representative. “Enhanced screening by primary care providers coupled with greater awareness among them of the difficulties that the disease presents to patients, their families and caregivers will, we believe, greatly serve the interests of all concerned.”

PHA and the international community congratulates PHA Israel and the Israeli PH community and looks forward to hearing about the success of this important event. Our Lantos Grant application period is ended, but if your group has a great idea that could use a boost, learn more about our International Seed Grant program.

More than a dozen PH associations worldwide contributed to the Building an Effective PH Association Guide, sharing their experiences, advice, and stories in order to help PH advocates establish and develop PH groups wherever they are — and it can always keep growing! Read through to find answers to your questions, and help us make this resource as helpful as possible by offering your suggestions or telling us your story.

What Has Your Group Been Up To?

A New Face for PHA’s International Services

PHA is happy to introduce Meghan Tammaro as our new International Program Manager. Meghan has been with PHA for more than a year now and is excited to begin working with our international partners. She graduated from Lehigh University in Pennsylvania with a degree in international relations, and has been working at PHA with our Board of Trustees and Rino on various projects.

Meghan will replace Christine Dickler, who is moving to New York City this summer to pursue a career in publishing. Meghan and Christine will be working together over the next few months on International Services projects and to finalize the transition.

Feel free to get in touch with Meghan via email at MeghanT@PHAssociation.org or on Facebook to welcome her when the transition is official!

PH Alliance, Online on Facebook

“PH Alliance” is a new private group for PH association leaders so we can meet each other where we are! Chat with other leaders privately, share photos, links, and events, and get to know your peers a little better. Content posted in the group is not viewable by non-members. Message Meghan Tammaro on Facebook for your invitation!

Connect with PHA

Links

» Research Roundup: a new benefit for members of PH Clinicians and Researchers and PH Professional Network (formerly PH Resource Network)

The information provided on the PHA website is provided for general information only. It is not intended as legal, medical or other professional advice, and should not be relied upon as a substitute for consultations with qualified professionals who are familiar with your individual needs.